XP Coffee Morning & Raffle Event
Monday 30th March at 10am at St Johns Hut, Forest Corner, Edwinstowe, NG21 9RN.
We need your help to raise funds for a special little girl called Livvy Holden who suffers from a rare genetic condition called Xeroderma Pigmentosum (XP). There are only 100 cases of XP in the UK and there is no cure.
When Ultra Violet light from the sun or other lights hits the skin on any normal person it damages the DNA which can result in sun burn and general ageing of the skin. A normal person has the ability to repair the damage done to the skin, new cells are generated and the cycle continues. With XP and Livvy there is no ability to repair the damage done to the DNA, as the body tries the cells mutate and cancers form. XP sufferers are said to be 1000 times more likely to get skin cancer in their life time including life threatening Malignant Melanomas.
Livvy had her first skin cancer at 4 years old. She has so far had 7 tumours on her face and has already undergone three surgeries to remove the cancers. In some countries unprotected life expectancy rarely exceeds 40 years. All exposure to UV must therefore be strictly prevented, the strongest UV radiation is from the sun, however artificial lights can give off UV too so it is a constant battle to ensure her environment is safe and she is always protected.
Livvy now lives in a UV free world, her home is protected with UV filter film on all windows, and any car that she travels in has to be protected to ensure no UV can come through the windows. If these precautions can't be met she wears a protective face visor, which we made ourselves. We have a UV meter so that her environment can be checked and every time she leaves the house during the day all of her skin must be covered at all times. Any exposure will result in more cancers, which we obviously want to avoid.
Day to day activities are a little more difficult for Livvy, just to feed her rabbit in the garden Livvy has to wear gloves, visor and full Sun Protection clothing. Livvy has factor 50+ sun screen applied every two hours during outdoor activities and during school hours. This gives her a first defence against UV under all her protective clothing. It's only at night time that she becomes free of the restrictions imposed on her from having XP. Visits to local parks are often in darkness and walking our dog Jack is left till dusk.
Our aim is to raise enough funds to contribute towards adapting her school into a UV safe environment. We want Livvy to be able to move around her school freely without the restrictions of her protective gloves and mask. We would also like to be able to provide Livvy with more high UPF clothing which will also help to further protect her skin against the harmful UV rays. Please join us on 30th March where we can share a coffee and a cake and help raise funds for this beautiful little girl. We will have yummy cakes for sale, a raffle with a number of excellent prizes and ‘guess the name of the teddy’ (named by Livvy herself!) We look forward to seeing you there.
We have set up a Facebook page at www.facebook.com/Livvysstarbrighttrust where you can see the fantastic donations and hampers plus keep up to date with how much we have raised and hopefully we will have some more fundraising events in the near future which will be posted on this page.
With Sincere thanks on behalf of Livvy’s Family and Livvy’s Star Bright Trust for your continued support.